My Journey with MDS

Welcome to this website

Diagnosis Day – 8th August                                                                                                                                                                                                                                                                                                                                                                                                                                     I was diagnosed with MDS on 8th August 2014, which came as a shock to both Sally and myself. I have decided to set up this website as a way of recording my journey and hopefully to provide encouragement and support to those people who are on their own journey or will be in the future. I will add more about my journey from August to New Year as the website develops. 

Admission Day - 3rd May 

On 27th January 2015 I had an appointment with my transplant consultant at University Hospital Southampton. In essence there is a good match available. So we appear to be working to May transplant possibly June. More info in the blog. We now know we are working towards potential admission in 3rd May - just when Cate is doing the Isle of Wight challenge


Discharge Day - 9th October                 


So after two transplants and 5 months 6 days I have finally managed to get to the point of being discharged, after what can only be described as an incredible roller coster ride through highs and lows. But thanks to the dedication and skill of the fantastic multi disciplinary team at the Bone Marrow Transplant Centre in University Hospital Southampton, they have been able to get me though this.

 

 

 

 

Blog

New Week - similar stuff.

16/02/2015 20:00
Blood tests today revealed that whilst Hb holding up more than usual, Platelets have dropped. So its back to hospital tomorrow for transfusion. See www.blood.co.uk  if you want to give blood or platelets, believe me I am reliant on and...
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Chemo week draws to an end.....

13/02/2015 20:04
Well managed the full session of chemotherapy this cycle, although I am feeling shattered. Still feeling positive, but I needed 3 units of blood this week. Also had a PICC line inserted, which I have to say makes a great difference. CQC are...
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Managing Chemotherapy

07/02/2015 00:00
A full on week with 5 chemotherapy sessions, blood transfusion, platelets and a picc line inserted, all went well this week. A number of appointments have come in as part of the pre transplant assessment. So it's later in the month for checks on...
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Posting on Delete Blood Cancer Facebook Page

02/02/2015 00:00
Hi All, Been asked to share somethings about my experiences with Delete Blood Cancer as a patient. Here is the post from their facebook page    Delete Blood Cancer UK 28 January at...
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Interesting Week .....

01/02/2015 19:27
So end of another eventful week. Chemo starts again tomorrow so trying to keep bug free for this cycle of 7 days worth of injections. Blood tests, transfusions and I am having a PICC line inserted on Thursday too.  Well done to my colleague...
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Lynne completed the challenge .............

01/02/2015 00:00
Well done to my colleague Lynne who completed her Dryatholon challenge raising funds for MDS and promoting Delete Blood Cancer and getting swabbed to be a potential stem cell donor......... in the process raising almot £500 for MDS. Brilliant...
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Great News - Donor Found

27/01/2015 16:40
  So I had an appointment today with my transplant consultant at University Hospital Southampton, which went well. In essence they have a good match (9/10) rather than the perfect 10 - he said I was slightly awkward or I think he meant my...
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Hospital Appointments

26/01/2015 09:00
Looks like it is one of those weeks in terms of hospital appointments. Just back from my weekly blood test, I am expecting a transfusion on Wednesday, results later today. Tomorrow I see the transplant consultant at University Hospital Southampton,...
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News

Have you got a London Marathon place - can you consider MDS as your charity please

01/10/2015 13:54
Very soon people will be finding out if they have got a ballot running place in next years...
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Well Done Bracknell Forest Flyers

16/06/2015 17:11
  Well done on Sunday -That was brilliant!  A massive well done and thank you to all of...
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Isle of Wight Challenge - Well Done + pictures

10/05/2015 13:14
Well done to Cate and team raising 5k for MDS
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Bracknell Forest Flyers: Fundraising for MDS

26/04/2015 20:26
We are the Bracknell Forest Flyers.  By day we are employees of Bracknell Forest...
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Cate + IoW challenge ....... in St Bede Newsletter

01/04/2015 22:21
St Bede Primary School HSA   On Saturday 2nd May, four St Bede mums will be walking...
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THE WAY BACK TO WORK - New Anthony Nolan Publication

05/03/2015 20:03
Anthony Nolan have produced a really good publication on getting back to work after a stem cell...
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My wonderful sister-in-law is raising funds for MDS doing the Isle of Wight challenge 2/3 May

05/02/2015 13:44
 Isle of Wight Challenge, 2nd – 3rd May, 2015       Our first Ultra challenge...
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Well Done Lynne !!!!

01/02/2015 18:26
Congratulations on achieving the Dryathalon and raising over £700 from work colleagues, family and...
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My colleague Lynne is doing the dryathlon in aid of MDS + promoting stem cell donation

15/01/2015 21:01
    See Lynne's fundraising page at:...
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Key Links and Support

MDS Patient Support Group

31/12/2015 00:00
www.mdspatientsupport.org.uk/          MDS UK Patient Support Group supports patients with Myelodysplastic Syndromes (MDS). Support, information, awareness, campaigns for MDS patients & families.
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Delete Blood Cancer

01/01/2015 00:00
  www.deletebloodcancer.org.uk/en Delete  Blood Cancer DKMS leads the fight to delete blood cancer by empowering people to take action, give bone marrow and save lives
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Leukaemia and Lympoma Research

01/01/2015 00:00
www.leukemialymphomaresearch.com We are a UK cancer charity dedicated to supporting people affected by leukemia, lymphoma, myeloma & other blood cancers. Find out about our charity here
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Leukemia Care

01/01/2015 00:00
www.leukaemiacare.org.uk/  Providing support to anyone affected by blood cancer
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